[Onsecondthought]

A little back story on me...I was "diagnosed" with PCOS about 5 years ago and when I say "diagnosed" I mean my doctor basically looked at my symptoms and said "if it looks like duck and talks like a duck, it must be a duck." She put me on birth control and sent me on my way. She never gave me any information or advice about the condition except that birth control would take care of it. So here I am, five years later, 65 pounds heavier and I haven't had a period in almost two years. After going to several doctors who all gave me the same "diagnosis" with the same course of treatment (i.e. birth control), I was finally given metformin which did absolutely nothing. I haven't lost a single pound despite working out for two hours a day, strictly watching my calories and making sure I always eat some protein or fat with my carbs. Amidst all this, I was diagnosed with hypothyroidism and am now on Snythroid and Cytomel.
So all this brings me to present day...I went to yet another doctor who put me on prometrium in the hopes of jump starting my period. I took it and nothing happened. So she sent me to a reproductive endocrinologist who ran some more tests including an ultrasound and the results all came back normal! Based on those labs, there was not one single indication that I have PCOS. All my hormone levels were normal, my ultrasound looked fine, absolutely nothing out of the ordinary. When I asked the doctor what that meant, she basically told me that based on my symptoms..."if it looks like duck and talks like a duck, it must be a duck." Her course of treatment...birth control.

Is anyone else this sort of anomaly? Could something entirely else be wrong with me and the doctors just aren't picking up on it?

[missunshine]

hi, well I can't tell you what is wrong with you, but I have the same problems with pcos. the thing with me is that still haven't gone to the doctor but i have all the symptoms. In the past year I have lost about 25 kg and the thing is even worse. I haven't had my period for about 9 months, I have hair everywhere, literally everywhere, recently I got spots on the neck, ... i'm affraid to go to the doctor cause i know she'll prescribe me birth control pills and there is a big possibility that i gain back my weight but I really don't want to be like I was before. but i have decided to pay a first visit to gino and we'll see what happens. I would give anything If the results were negative but many members of my family also had these problems. these hair problems really affect my selfesteem. is these any cure for that, do the pills fix any of that or help even a little?

[PinkHoodie]

I am wondering what kind of diet you were on when you tried to lose weight? I have never had success except for watching/cutting out carbs and sugar. PCOS LOVES those 2 things.
Its really hard to know. Did they test you for Insulin Resistance? Also sometimes people's blood work doesn't show signs of PCOS, especially in the minor cases. Did they look at your ovaries? Were there any cysts? That really is the biggest sign of PCOS.
Were you on BC that made it so you didn't have periods? Or were you on one of those ones that you can go months without one?
There really are a lot of possibilities, but coming from someone who didn't have a period for 3 years, they really need to do something to get it started. My Dr gives me a progesterone shot in my butt when I need to have a period. PCOS is not a text book disease though. It can vary widely from woman to woman. But almost all of them do get cysts.
Hope you can get it figured out, its a very frustrating disease.

[laurenbeast]

Girl, I've felt your pain and I know a lot of other girls here have felt it too. Doctors can be very, very, very frustrating. They'll go around in circles with you and keep tons of information from you sometimes, and it sort of gets to the point where you're wondering if they even really qualified for their title as a doctor. My very first gynocologist was like that. Don't get me wrong, she was such a sweet lady, but she put me in for blood tests and an ultrasound, concluded I had PCOS, put me on birth control and metformin, and would shoo away any of my questions or attempts at having a discussion about what was going on with my body because it seemed like she didn't wanna waste the time.
Anyway, fully understanding what's going on with your body is really, really important. Try an online search for a doctor who other people have given reviews about. I found my current ob/gyn through a website where you rate doctors and it turn out she's very good. When you find the right one, they'll suggest the right solutions to you. But it's important to have bloodwork and ultrasounds, even if you have to redo them. Did you have a normal ultrasound or a transvaginal ultrasound? I've had both. I had absolutely no idea what I was looking at with my first regular ultrasound (with the first doctor) and I didn't get much explanation, but I actually got to see my cysts when I had the transvaginal one.
Anyway, other than that I think it's really important that you find a good doctor who specializes in hormones so you can get your thyroid problems especially straightened, because although you dieted and exercised, that seems like the reason you probably have trouble with the weight. A good ob/gyn is also important.
I've also heard of having your period brought on without medications in a way where they basically go in and scrape it out... I really can't remember what the procedure is called at the moment, but if you haven't had a period in that long, it may be worth it.

[laurenbeast]

Originally Posted by missunshine

hi, well I can't tell you what is wrong with you, but I have the same problems with pcos. the thing with me is that still haven't gone to the doctor but i have all the symptoms. In the past year I have lost about 25 kg and the thing is even worse. I haven't had my period for about 9 months, I have hair everywhere, literally everywhere, recently I got spots on the neck, ... i'm affraid to go to the doctor cause i know she'll prescribe me birth control pills and there is a big possibility that i gain back my weight but I really don't want to be like I was before. but i have decided to pay a first visit to gino and we'll see what happens. I would give anything If the results were negative but many members of my family also had these problems. these hair problems really affect my selfesteem. is these any cure for that, do the pills fix any of that or help even a little?

Aww ): It sounds like you mostlikely do have this condition, especially if it runs in your family. I'm not sure about my grandmother on my mom's side because she was adopted, but I know that no one else in my father's side of the family have the issue. I do believe that it is possible my grandmother may have had the genes for it, and it was passed by my mother, because my mom is also overweight and she is not a bad eater whatsoever (the nice thing about the two of us is that the shapes of our bodies are very much alike and the excess weight does not look horrendous on us, hee hee.) Her and I eat like normal, healthy human beings, but still have the issues. She does have a little of the extra dark hair, but she was always fertile and she's never had irregular periods. She was looking at my Insulin Resistance Diet book and found that a lot of the pointers for insulin resistance in there applied to her.
So anyway, I would definitely suggest that book to you, or that you check it out from the library, because it is not a difficult transition or way to eat and it may ultimately help you lose the weight. And I know that it is SO frustrating being worried about gaining weight back with birth control, but it just takes the right pill. I've found a very good one for me (no harsh side effects so far) after only two tries, but I can imagine it'd be very agonizing not having good results over and over. Just keep in mind that it's mostly water weight you gain and not fat with the birth control. I was bloated the first week, but it went down and now I feel better and look normal again. It's a pain in the ***, but weight gain with birth contol CAN be manageable. If you're worried about the doctor being pushy with you or not giving you enough information on the b/c methods, try researching... Sometimes lower dose versions are better. You might also want to think about trying something like the nuva ring where you don't have to risk missing a pill and throwing yourself out of whack.

[astrophe]

Well, I'm still a PCOS/IR/hypothyroid patient even if all my labs all show "normal" right now except the thyroid bit. My endoc told me 2 years ago when I had improved enough to come off Glucophage that if you didn't know I was a PCOS person, you'd think I was normal from my labs. So perhaps you've actually managed to control most of the symptoms?

What did you get tested exactly?

BTW, Glucophage did nothing to help me lose. It simply stopped me from gaining any more. And until I had my thyroid meds correct, nothing would happen no matter what I did diet or exercise wise.

So perhaps you are in a similar boat?

I've never taken prometrium -- I've always been given provera to induce a period. Have you tried that? What about charting out your cycles to see what it looks like? I used www.tcoyf.com software. That can give you some clues too.

There's at least 5 different types of PCOS people. You sound like you are anovulatory... so what about the androgens?

• traditional PCOS -- anovulatory, increased androgens, no insulin resistance
  
• endocrine syndrome X -- anovulatory, increased androgens, insulin resistance or type 2 diabetes
  
• non-traditional PCOS --anovulatory, normal androgens, obese, insulin resistant or type 2 diabetes
  
• non-traditional PCOS -- ovulatory, increased androgens, mild insulin resistance
  
• idiopathic hirsutism -- ovulatory, increased androgens, no insulin resistance

Have you read Vliet's Savvy Woman's Guide to PCOS?

It's My Ovaries, Stupid also has a good PCOS chapter.

HTH!
A.

[Onsecondthought]

Thanks so much to everyone for their responses. I'm glad to see that I'm not alone in this. Let's see if I can answer everyone's questions/comments:

missunshine: I totally understand your hesitation about birth control. Right before I went on it, I had just finished losing over 70 pounds. As soon as I started the birth control, I started having a really hard time maintaining. I was doing the exact same thing as when I was losing, but once on the birth control pills, I started gaining. I started working out more and eating less. At one point, I was working out 2 hours a day and eating 600 calories and still gaining. When I told this to my doctor, she just told me that weight can be difficult to lose and to keep at it. When I finally stopped taking the birth control, not only had I had gained all the weight back, I'd pretty much given myself an eating disorder. The day I stopped taking the birth control pills was the last time I had a period. The only good thing about the birth control pills was that it did help clear up my acne and facial hair growth.

pinkhoodie: They did test me for IR, but the labs came back normal. I also had an ultrasound last week and they said that not only did I not have cysts on my ovaries, I also didn't have very much of a lining and for someone who hasn't had a period in 2 years, it's more than a little unusual. As for my diet, I've pretty much tried everything including high protein and pairing all my carbs with protein and nothing has worked.

laurenbeast: I'm in the same boat with you. I've been to so many doctors that my insurance company must think I'm nuts. Unfortunately, all the doctors have been the same. I tell them what symptoms I have, what I'm having problems with, what all the previous doctors have said and done to help which hasn't worked and they all end up basically throwing birth control at me saying "Take this, it will help. The rest is in your head." Even when I went to see an endocrinologist, she put me on my thryoid meds, but when my labs came back normal even when I still felt like crap, she said "Sorry, there's nothing else I can do."

astrophe: I haven't been able to control any of the symptoms. I still have the acne, the weight, the hair growth, the missing periods. I have all the symptoms, but my labs are fine. Even my thyroid labs are coming back fine even though I'm constantly tired and fatigued. As for the androgens, I'm actually on DHEA right now to help with the fatigue and for adrenal support, but when I had my testosterone and estrogen tested last week, they were both normal. Actually, my estrogen was on the lowish side, but within the normal range. Thanks for book suggestions. I'll have to look into them.

I've got all the doctors scratching their heads, but instead of trying to figure out what's going on with me, they're passing me off because they don't want to deal with me. It's really frustrating because I just want someone to tell me what's wrong with me rather than trying to treat the symptoms individually.

[PinkHoodie]

Just wondering did they test your FSH and LH levels? That was the biggest indicator for me as far as blood work.
That is really strange about your lining not having built up. My dr had to scrape mine out once he heard I hadn't had one for over 3 years...PCOS doesn't always cause cysts. I know I didn't have them when I was eating right and exercising, but I was also anovualtory. Some women just have unexplained infertility too...
I'm sorry its so hard to find out what is going on with your body. Even though I have been given a diagnoses of PCOS, there really is no way to treat it completely. I'm hoping as I lose weight the symptoms will get better...but I'm not holding my breath. I have always been anovulatory, ever since I started having periods. And DH and I have been unprotected since 2004...so it gets frustrating when you want to have a baby. I really hope you can figure it out! I forgot if you said this, but have you been to a reproductive endocrinologist? Sometimes they have more experience with these weird symptoms.

[astrophe]

I have all the symptoms, but my labs are fine. Even my thyroid labs are coming back fine even though I'm constantly tired and fatigued.

they all end up basically throwing birth control at me saying "Take this, it will help. The rest is in your head."

Oooh, that makes me so mad for you! I was told that it was all in my head too. Bah!

Nnnrgh... that happened to me in the mid 90's. All the docs told me my tests were normal. A nurse quietly told me on the side that while my labs fell in "normal range" it was on the "higher end" and perhaps for my own particular body chemistry, that was not right so to keep an eye on it.

It took another few years to get "bad enough" to come out of "their" normal range but by then I was feeling worse and gained even more weight! So I was mad because all along I was saying I didn't feel right and it was like nobody would listen. I felt like saying "Look at me and listen to me, stop reading a paper! The paper is not the patient!"

Then I came to find that different offices/labs may consider different numbers to be "normal". Like some were stricter about it than others.

I think PCOS: Hidden Epidemic has lab values. I can't remember now... Maybe look there?

I had to try a few different docs before arriving at the endoc I like now. Not all docs are well versed in PCOS care.



A.